I'm off to meet the Rheumatologist tomorrow to see if it's GCA, finally after originally seeing doctor in Feb! Tried reducing Pred to 25mg but headache returned so keeping on 30mg.
I've read on here that I'll need to take Vit D and Calcium supplements against osteoporosis. Does anyone take a Multivitamin plus Minerals to cover it?
Also what will the Rheumy be checking or asking me?
My main problem I'm worried about is returning to work full time & how to pace myself as I get concrete legs after walking!
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Hollyhock11
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Ohhhhh, good luck! I hope you find the answers you are looking for!
I have been out of work since I was diagnosed in November... and I only worked part time.
Granted, I am almost 64 and have had lots of setbacks.. but I cant imagine working 7-8 hours in day, even if it was only 2-3 days a week. There is no way!
I also wonder if I have the mental capacity? The "Pred Head" plays a number on my memory and cognitive thinking, not that my job was "rocket science," but I did have to "think," and make decisions.
Not to mention the "concrete legs," by the time I walked to the bus stop to catch the bus to get to my job, I'd need a nap.
I took multi vits, but you do need the Cal+VitD - should have been prescribed alongside Pred.
Do hope you haven’t got GCA, but one thing at least you’ll know!
Rheumy will be checking your symptoms - so make a list of what they are- just to remind yourself, and anything else significant you want to mention. They are limited for time, so not war and peace, but enough so you don’t forget. He may also want bloods tested again, depends how current your results are. Plus he may suggest a biopsy, but as you’ve been on Pred since Feb that’s probably a waste of time.
GCA is a serious systemic illness, so it’s unreasonable for you to be expected to go back to work too soon, but he’ll probably advise you to speak to your GP and your HR Dept regarding that. There are a few on here of working age, but most of us with GCA have retired, so can’t help from a personal point of view, but I’m sure someone will.
You really ought to have your vit D levels measured. I was found to be properly deficient and was given a short term mega dose. Now I take vit D and Calcium on prescription, which they ought to give you too ( Adcal).
I hope you get a good wise Rheumatologist who will put you at ease and find out just how you are and how best to help you through your symptoms. You may wish to sound them out about slow tapering. Big drops make you suffer. That “ concrete legs” symptom needs to be explored, you don’t sound ready to return to work. Do you have a good employer who will work with you on job design, hours etc. To ensure that they support you in your return to work? Under the Equality Act you are entitled to that kind of help. GCA is a serious systemic disease that can last several years. If it is not GCA then something else significant is going on. 🍀
The concrete legs - I'm trying to build up my walking, but this aft I was very tired by 3pm, so it's a worry. Will ask about that too. Sadly I need to work as my OH just retired!!! Dorsetlady it'll be a new job so not keen to disclose new illness.
Everyone has advised well. A short list of each symptom...mine wasn't really bothered about how I 'felt", so say headache etc out of 10, if 1 is okay and 10 is unbearable.
Its delicate balancing act disclosing an illness especially at a new job. On one hand they can put support into place. On the other they will be arses. I had disclosed some aspects of health and others developed and I had no choice but to disclose. When I started looking for more doable work (and this was for things other than PMR) I knew as soon as they saw my walking stick a decision was made. Not right but I didn't blame them.
I used to work in the HR department of a large organisation. I can understand your fear of disclosing your condition. How long have you been there?
My organisation would have taken it on the chin and patted ourselves on the back for employing a disabled person and got on with making reasonable adjustments for you, as required by law. This was my area of responsibility and I know that some managers needed “ educating”. You’ll need to see the lay of the land in the new job and absorb the culture. Then hopefully you can talk to someone you trust and all will be well. I hope it’s not too physical or stressful a job. You didn’t do this on purpose it’s not your fault, and you have rights, let that stiffen your resolve.
I'd just add that you shouldn't take your calcium and vitamin D supplement at the same time as your pred. I take the pred in the morning and then one supplement tablet at lunchtime and the other at dinner time. I might add that I wouldn't have known this without this invaluable forum. My rheumy never warned me.
I am 76 and have been on prednisolone for 7 yrs and today i had to go back to 15mg. It looks as though i am never coming of this drug but am thankful there is something that eases the pain. My blessings to all of my fellow sufferers of this terrible disease
I took an 'over-the-counter' multivitamin and mineral supplement for 8 months after I was diagnosed. At that point, a blood test for vitamin D showed me to be 'properly deficient' like SheffieldJane, so I had 8 weeks of a megadose, before starting the twice daily prescribed calcium and vitamin D supplement.
I had to wait 6 months to see my Rheumy! Hope all goes well at your appointment.
Gosh, I had blood test at Doc's one day hospital rang that afternoon and off to rheumy for ultrasound 3 days later. The GP has just started me on calcichew with vit D as I cannot take the one beginning with bu (brain dead). She also said to wait 5 hours after taking prednisolone before I take other tablets (i.e. levothyroxine). I tend to write a list of what I want to ask, as the rheumy is not the most approachable plus I forget. Good luck and try not to let them bamboozle you.
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